Carlisle's Diary

Invisible Illness

***Note: This entry is about my own life so that you all know what I have to deal with every day with this illness. Just want to bring more awareness to M.E. If you have any questions afterwards, please let me know. Xoxo Olga***

Dear Diary:                                                                        May 14, 2014

          After the funeral of John and Maria along with their relatives, life has more or less returned to some form of normalcy. Kim and Michelle have decided to stay in Italy a while longer so that Michelle could grieve properly. The rest of us meanwhile, returned home and got back to our everyday tasks of school, college, and the hospital for me. I knew that if I worked it off, I could get through the grieving process myself. The only thing I told the people I worked with at the hospital is that John and Maria had gone to Italy for vacation and had been killed in a car accident and since they are native to Italy, that's where they were buried.

          Everyone was very sympathetic to me and told me that I could take more time off if I needed. But what I needed to do most was work. So I decided to ease off my ER rounds and just see the patients already in rooms. This is how I met Marsha. She was 30 years old and she was brought in by her mother 2 days before I came back on shift. She had full blown tachycardia which means her heart rate and pulse would race over 100 for no apparent reason. She'd been bedridden according to her mom for 10 months with symptoms of an invisible illness called Myalgic Encephalomyelitis (ME). I've heard of it before and therefore was very interested in her symptoms and how she was coping.

          Marsha was a feisty one as she had already kicked 3 of our top psychiatrists and residents out of the room with threats of harm if they returned. Reason for that was that ME was still misunderstood by a lot of doctors who thought it a psychological illness as opposed to a neurological one. Many even lumped it together with things like Lyme disease which considering where we lived, was a common thing. But in Marsha's case it was different. I knew from doing in depth study that Marsha was right; it was a neuro-immune disease and so when I was introduced to her, she looked at me with poker face not belying any emotions; she kind of reminded me of Rogue with that face and I understood what it meant. I was there to earn her trust; she didn't give that away. I was absolutely up for the challenge. Charlotte had already checked her vitals for what was probably the millionth time that day, so now it was my turn to speak with this young lady.

"Hello Marsha, I'm Dr. Cullen. I understand you have had a lot of issues with tachycardia lately added to the list. I also know that you aren't a fan of shrinks so you don't have to worry. I'm not here to give you a psych exam, I just want you to give me all of your symptoms and we'll go from there. I'll be upfront with you always. If I don't know something I will tell you. How does that sound?" You could tell she was very shrewdly listening to everything I had to say and then she spoke:

"Sounds good." She got comfortable in her bed as I took out a pad and paper.

"Alright, so let's start with just your symptoms."

"Ok well other than the tachycardia, I have problems with concentrating and brain fog or head full of cement cobwebs as I like to explain it. Then there's the beyond extreme exhaustion where I need a 6 or 7 hour recovery period after a shower because I can't breathe. I can only take showers on days I have some fumes in my body. I have hand tremors, short term memory loss, vertigo, hot flashes, pressure in the head, Novocain like feeling sometimes in my whole body, and probably a few more that I forgot."

"When did you notice this all really hit home so to speak?"

"Last summer, I graduated with my MBA and crashed. I'm bedridden and I can't study or work." She said with a look of sadness.

"You were going to continue your studies or get another Masters?" I asked curiously.

"Yes, I was going to start my Ph.D this January, than I pushed it to March, and then indefinitely because this illness is just not leaving me alone."

        You could tell she was very frustrated. And who wouldn't be? At age 30, a totally perfect age to get a life and career going and you can't even leave your bed or the house. Her mother had told me that Marsha was not a quitter and the reason she didn't like our residents and shrinks was because she also had Depression and Anxiety since she was a kid and she didn't want them to start tying things together without proper testing. And she was on a very strong medication for her depression to begin with. She hated doctors that barked up the wrong tree and lord knows we have a lot of those.

        After listening to her talk about how she has found support groups through social media of people with the same illness as her, it gave her the hope she needs to keep moving forward a day at a time. I told her to trust her gut and though I couldn't heal her ME, I did prescribe her a medication to get rid of the tachycardia; one less symptom of an already overwhelming illness. I sat with her for hours as we spoke about her life's achievements and things she still wanted to other than the doctorate like become a college professor in Business. She said she had done the corporate thing and it just wasn't for her. Now all that was standing in her way was this dreaded illness.

        ME does kill people; no one knows about that part because of the lack of recognition. But one feels about 30 years older than they actually are. For once, I couldn't do anything when it came to an illness; it's incredibly hard to treat something that is invisible. She said she had a naturopath that gave her supplements so hopefully that with some fresh air would eventually heal her. I spoke with an ME specialist in England; that's the other country other than our own that's in the front lines of finding treatment and possibly a cure for ME.

        Ironically, this specialist was also a vampire and a vegetarian just like my family and I. He was well known among the Watcher circle which once again shows you how small the world really is. But I digress. He said that supplements and medicinal spas located in Europe and Israel were the best bets for treating this very debilitating illness. I mentioned all of this to Marsha and her mother and both said they knew all about those. Apparently both Marsha and her mom were from the USSR originally and knew all about the medicinal spas as those were and are still a common thing in Europe. Marsha's problem now was that she couldn't make the 11 hour flight to Israel because of how hard everything was for her.

        I learned a lot from Marsha that day; most importantly was that no matter what obstacles stand in your way and no matter how much you want to give up, just keep on clawing forward a day at a time. It made me think of what Michelle was going through. Even though she knew that her parents were going to die, it's a totally different ball game to see them go through that process and then not have them there anymore. She just had to move a day at a time. It will get better and someday perhaps she and Kim will also tire of the immortal life and decide to join both of their parents. Who knows?

        Just as I said goodbye to Marsha for the day—they were going to keep her overnight just in case; to make sure the medication for the tachycardia worked properly—she called my name. When I turned around, she gave me a little slip of paper that said:

"ME is untreatable and incurable. Spread awareness that we're not alone. Though time stops for no one, it does let us move on in peace. To understand more about what it is like to live everyday with ME check out the websites." (Links are provided below)

        I looked at the brave girl who now smiled at me with ancient eyes full of wisdom as I smiled back nodded and left the hospital to go home....with just a little bit more peace in my own still, dead heart.

~Carlisle Cullen

www.meadvocacy.org

https://youtu.be/qBriPTFOtmY ~ What is ME?